Fibromyalgia is frequently referred to as an invisible disease, but this year’s Fibromyalgia Awareness Day on May 12 aims to lift the veil and make this disorder visible.
Also on May 12, advocates will publicize the health effects of myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS), which is a chronic condition marked by persistent, extreme fatigue. The relentless feeling of exhaustion sometimes develops in conjunction with joint pain, headaches, difficulty sleeping, and interruptions in memory or concentration.
Earlier in the month on May 10, efforts to raise awareness about lupus, a similarly under-recognized disease, will take place.
Fibromyalgia awareness is slowly growing
Patients living with under-recognized diseases often have to fight every step of the way. They must fight for an accurate diagnosis, fight for adequate medical treatment to alleviate their pain, and fight for recognition from a society that has little tolerance for not operating at the top of one’s game.
Fibromyalgia is a disease of widespread pain, exhaustion, and frequent mental fogginess that affects about five million people, mostly women, according to the Centers for Disease Control and Prevention (CDC). Many years ago, doctors believed the condition was a mental disorder, and not a physical one. To this day, some people in the general population doubt the disease’s existence, a misperception that’s spurred on because there still aren’t any medical tests available for diagnosing the condition.
These misperceptions often persist not only because fibromyalgia is difficult to diagnose, but also because it’s difficult to treat, says Connie Luedtke, a Mayo Clinic nurse. She says:
“In our society, people tend to think that there is a cure or a fix for every medical problem.”
When a cure or fix isn’t readily available, it’s frustrating for everybody, she adds. The key with fibromyalgia is making a series of lifestyle changes including prioritizing rest and adjusting expectations to acknowledge that having a chronic health condition often requires slowing down and not operating at such a high level. Learning to relax and listen to the body’s signs that it needs rest instead of pushing through is important for managing pain, Luedtke says.
Part of the purpose of Fibromyalgia Awareness Day is to educate people about the realities of living with fibromyalgia and inform people that it’s a very real, physical disease that’s difficult to treat.
Doctors are learning more about what causes fibromyalgia, and in the past few years, research has shown the condition results from disturbances in the way the brain and spinal cord process pain signals. While key questions about the disease remain unanswered, it’s an active area of research. Funds raised by the National Fibromyalgia and Chronic Pain Association (NFMCPA) help pay for this ongoing research and additional resources for those living with the condition.
Ways of participating in Fibromyalgia Awareness Day
To do your part in raising awareness on this international day of recognition, consider taking part in a local event. A listing of events can be found on the NFMCPA’s website.
In Arizona, a woman is organizing an event that will potentially be held at the capitol building in Phoenix. It will advocate for an official state proclamation of May 12 as the official day for recognizing fibromyalgia and chronic pain. The event will also support legislation for establishing a special house in Tucson designated for families of wounded veterans.
Other ways of participating in Fibromyalgia Awareness Day include organizing an event on your own. You may hold a raffle to raise awareness and money for the cause, or even post flyers around town to educate passers-by. If there’s a local fair or farmer’s market that day, you might pass around brochures or flyers to let people know about Fibromyalgia Awareness Day.
Chronic Fatigue Syndrome Awareness
ME/CFS Awareness Day is also on May 12, the birthday of Florence Nightingale who was believed to have lived with CFS. The effort aims to elevate social awareness about the debilitating condition.
ME/CFS has several things in common with fibromyalgia, including the brain fog that makes thinking difficult. CFS may also involve pain, although widespread pain is more a hallmark of fibromyalgia. Some patients may have what’s called comorbidity, which is when they have two separate chronic conditions, in this case fibromyalgia and CFS. Fatigue is considered chronic when it lasts for at least six months, although the severity may vary from day to day or possibly hour to hour.
While some people experiencing low energy levels may feel better after exercise, those with chronic fatigue syndrome actually feel worse after physical exertion. Doctors call it post-exertional malaise. This feeling of exhaustion may develop anywhere from one to three days after expending energy, according to WhatHealth.
Patients with chronic fatigue syndrome also face difficulty getting diagnosed and figuring out appropriate treatments, with doctors sometimes telling patients it’s all in their heads, according to the official awareness day Facebook page.
To participate in awareness efforts, consider posting informational tidbits on social media to educate followers about chronic fatigue syndrome. Also, be sure to read up on the latest research, curated on the official Facebook page, so you can educate friends, family, and acquaintances about the illness.
World Lupus Day
Lupus is an autoimmune disease that can be fatal, unlike fibromyalgia or chronic fatigue syndrome, which just make like really difficult. Despite its seriousness, the disease is under-recognized, according to World Lupus Day organizers.
In lupus, the immune system is overactive. Symptoms include swelling in the feet, legs, or hands, fatigue, headaches, fever, and a butterfly-shaped rash on the cheeks and nose, according to the Lupus Foundation of America. The typical lupus patient is a woman between the ages of 15 and 44, with symptoms often developing before the age of 18, even in people diagnosed later in life.
Treatment varies depending on the illness’ severity, but often consists of medications administered by a rheumatologist. Medicines are chosen in an effort to minimize fatigue and joint pain, and reduce inflammation.
On May 10, people around the world will gather to raise awareness and funds for research. To support World Lupus Day, consider posting an awareness flyer around your community or tweeting or posting facts about the disease on social media.
Do you plan to participate in any awareness day activities?
Image by joyousjoym~ Blessings via Flickr